Wednesday, June 18, 2014

Stretched thin by care-giving

I haven't written for a while because my mother is in hospital, sinking. None of us dares utter the possible, dire end to this crisis - even the doctors give vague, cagey prognoses peppered with upbeat findings ("Well, her fever is gone!" or "Her CO2 level has dropped somewhat!")

We vacillate between expecting her to return to the senior citizens' home and expecting her never to leave the bed.

So we take turns feeding her, keeping her hands away from oxygen mask which she yanks off incessantly and  listening to her hallucinate: "Clear the door"; "Get me a red ball"; "I want an easy birth"; "I need a wheel." and the like.

Compounding the stress and confusion is that while I feel concern and pity, I do not feel close to her. She has been a tormenting feature in my life for as long as I can remember. Her prime target was my late father, a kind, gentle man whom I loved dearly. But she wasn't at all enamored with me or my brother either. And when I can't dredge up any sadness, the guilt sets in.

I keep myself semi-sane during the many hours at her bedside by sketching. Here's a sample.

Anyway, enough guts spilled.

C. has suffered from my extended hospital visits. Other than meals, I only manage to do her walking and sitting exercises every other day. At least she has had her hydrotherapy sessions on schedule this week.

And another bit of good news: her neurologist wrote that she's proceeding with the application for cannabis approval and requested a few of our necessary details. So that's one step forward and zero back.

On the seating front, though, progress is at a standstill. The new equipment has supposedly been ordered from overseas but for all my chasing I haven't been able to learn any more than that from seating-expert, E. My high regard for her has dropped significantly.

So for now C. still languishes in her ill-suited insert.

Today was the end-of-year party which I was forced to attend. C. and her classmates "made mini pizzas". I use the word "made" very loosely i.e. they were in the vicinity of pizza-making. The point of these extravaganzas geared for the higher functioning student is lost on me. At least I got this photo of C. you see at the top of the post.


Elizabeth said...

How difficult it must be for you to be care-giving on both sides of the spectrum, particularly given your conflicted relationship with your mother. I hope you have some opportunity to replenish yourself. I am glad that things are moving forward with the cannabis oil.

The Sound of the Silent said...

Thank you for your encouragement. I hope you see a return of seizure-freedom for Sophie with your recent cannabis tweaks. I look forward to the day when the inside dope (intended!) that you share on your blog about cannabis will be relevant for us too.

And I was so shocked to read your post about Sophie's pathetic "summer program". I feel that same way you did whenever I drop C. off at the deficient school she attends.

There's just no escaping the fact that the system - everywhere- considers our children third- class citizens.